Deciding to become a living donor

Every year hundreds of people die while waiting for an organ transplant or before they even get on to the transplant list. Organs are in short supply and the gap between the number of organs available for transplant and the number of people waiting for a transplant is increasing. This growing demand has been partially met by more organ donations from living people, usually a kidney, as a healthy person can live a normal life with only one functioning kidney. Kidneys from living donors have a better chance of long-term survival than those transplanted from people who have died. The main reason is that the donor is alive and healthy.
Part of a liver can be transplanted and it may also be possible to donate a segment of a lung and, in a very small number of cases, part of the small bowel. For all forms of living donor transplants, the risk to the donor is considered very carefully. Before a living donor transplant can go ahead, thorough assessment and discussion must take place and strict regulations met. The Human Tissue Act 2004 established the Human Tissue Authority (HTA). One of its roles is to regulate living donor transplants in the UK (see Assessment and tests‘).In this summary we will only be discussing kidney transplants as none of the people we interviewed had donated other organs.

Deciding to become a donor is a major and serious decision. Most people we interviewed looked on the internet for more information before talking to their GP or a transplant nurse. Many also discussed their thoughts with family and friends.

Living donors are often a close relative but may also be a partner or close friend of the recipient. Donors may also offer to give a kidney to someone who is on the waiting list for a transplant but whom they have never met (non-directed altruistic donation or anonymous donation).
Some of the people we interviewed had donated a kidney to a family member with kidney failure.

In 1997, when Margo was living in America, she donated one her kidneys to her younger brother,…

Age at interview 61

Gender Female

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Darren donated a kidney to his daughter. Shed had kidney problems for many years and was on…

Age at interview 39

Gender Male

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Harmanjit didnt want her father, an active outgoing man, to go on dialysis, so offered to be a…

Age at interview 31

Gender Female

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People from Black African, African-Caribbean and South Asian communities in the UK are more likely to need a kidney transplant than the rest of the population. Unfortunately, while the need for donor organs is higher than among the general population, donation rates are relatively low among Black and South Asian communities, reducing the chance of finding a successful match. Therefore, not only are members of these communities at higher risk of kidney failure, it is also harder to find a suitable donor and waiting lists are growing (see What is organ donation).
A few people donated one of their kidneys to a friend after learning that they were seriously ill and would need a transplant. Several mentioned that they had been aware of the difficulties of life on dialysis and were keen to save someone from this ordeal.

Wallee heard two very moving and inspiring stories about living kidney donation. When he heard…

Age at interview 58

Gender Male

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Annabel knew that one kidney was enough to live healthily on. When she found out that a friend…

Age at interview 64

Gender Female

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Some people we interviewed donated one of their kidneys to someone waiting on the transplant list who they did not know. Their reasons for wanting to donate to an anonymous recipient were varied and unique to each person.

Di was interested in donation for some time. When she learnt it was legal in the UK to donate to…

Age at interview 58

Gender Female

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Chris, a doctor, had always been interested in helping people. Everything he read led him to…

Age at interview 73

Gender Male

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Paul, a GP, knew that a transplant made a huge difference to a patients life. When a patient…

Age at interview 56

Gender Male

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Maggie was interested in altruistic non-directed kidney donation before it became legal.

A conversation over dinner led Maggie to think about becoming a donor. Shed have been grateful…

Age at interview 66

Gender Female

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Clare wanted to give something back to the NHS after years of help for alcoholism. When she heard…

Age at interview 59

Gender Female

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When deciding to donate a kidney, donors took into consideration the level of personal risk from the operation. All operations carry some risk and this is no different for living donation. Donors are at risk of infections (e.g. chest, wound or urine) and, more rarely, bleeding or blood clots. There is a very small risk of death for the donor’ for this operation it is estimated at 1 in 3000. (NHS Blood and Transplant 2015). Donors with families often had to reassure them that the risks of the operation were very small.

Donating a kidney does not mean that the donor’s health might not be affected in some way in the future. It is always possible that something unexpected could happen to the remaining kidney. As the health of all donors is thoroughly assessed before donating, the chances of this are very small, especially if the donor has a generally healthy lifestyle after donation. In the unlikely event that a problem occurs with the remaining kidney, dialysis treatment may be needed earlier than if the person had both kidneys.

‘The overall risk of developing ESRD (End Stage Renal Disease) after kidney donation remains very low, occurring in less than one in 200 (0.5%) donors, and it remains much less than that of the general (unscreened) population.’ (Addendum to the UK Guidelines for Living Donor Kidney Transplantation -November 2015*)

Once the people we interviewed had decided they would like to become a donor, they needed to be thoroughly assessed to see if they would be suitable (see ‘Assessment and tests‘). Several advised other people to think about living kidney donation as it could help transform someone else’s life (see Views on organ donation’ living donors‘).

We haven’t been able to speak to any adults who had donated a part of their liver, lung or small bowel.

The inquest

An inquest is a legal inquiry into the medical cause and circumstances of a death. It is held in public – sometimes with a jury...